Saturday, December 8, 2012
Lots of people are in my corner.
| Tags: HD closet, advocacy, advocate, Huntington's, wife, daughter, mother, symptoms, neurological, health, University of San Diego, testing, tested positive, Parkinson's, Lewy body disease, at-risk, awareness, leader, hope, Brazil, Isis, genetic, stigma, research, brain, gene-positive
Friday, August 3, 2012
Testing could start in two years.
| Tags: stem cell, mesenchymal stem cell, brain, Huntington's, testing, CIRM, Jan Nolta, symptomatic, clinical, BDNF, gene therapy, cellular therapy, neuron, symptoms, Alzheimer's, Parkinson's, therapy, FDA, psychiatric, Bush, embryonic stem cells, induced pluripotent stem cell, AIDS, therapies, advocate, advocacy, activist, Judy Roberson, striatum, RNA interference, siRNA, antisense, huntingtin, drug, neurodegenerative, pharmaceutical, cocktail, hope, mother, scientist, CHDI, treatment
Thursday, February 16, 2012
Practical strategies for getting people involved.
| Tags: Huntington's, denial, symptoms, stigma, research, LaVonne Goodman, Louise Vetter, Huntington's Disease Drug Works, clinical trial, discrimination, diagnosis, support group, advocacy, doctor, Center of Excellence, genetic, caregiving, genetic testing, psychologist, neurologist, genetic counseling, treatment, juvenile HD, testing, awareness, cure
Thursday, February 9, 2012
How do we convince relatives to join the cause?
| Tags: denial, stigma, clinical trial, treatments, cure, mother, father, daughter, wife, sister, HD closet, genetic, discrimination, gene-positive, symptoms, blog, CHDI, activism, activist, HDSA Person of the Year, testing, tested positive, tested negative, supplements, California, nursing home, observational study, advocate, advocacy, Huntington's
Tuesday, January 17, 2012
HD claims lives of two more children.
| Tags: Huntington's, treatments, cure, juvenile HD, juvenile Huntington's, research, onset, mother, daughter, wife, symptoms, seizure, death, father, gene-negative, gene, genetic, Johns Hopkins University, CAG repeats, testing, genetic testing, Social Security, feeding tube, nursing home, stem cell, cells, tested positive
Sunday, January 8, 2012
It's time to stop feeling timid!
| Tags: blog, Huntington's, mortality, genetic, discrimination, mother, death, HD warrior, father, daughter, wife, genetic test, onset, symptoms, activist, science, Alnylam, research, stigma, treatments, cure, HD closet, CHDI, Catholic, spiritual, faith, brain, gene-positive, anxiety, clinical trial, HDSA Person of the Year, advocacy, suicide, abortion, genetic testing, pregnancy, testing, test, Huntington's Disease Drug Works, LaVonne Goodman, denial, neurological, asymptomatic, caregiver
Sunday, December 18, 2011
A young woman prepares for the worst and prays for the best.
| Tags: Huntington's, abortion, juvenile Huntington's, juvenile HD, gene-positive, son, daughter, mother, father, blog, love, wife, tested positive, tested negative, HD-free, suicide, mercy killing, assisted suicide, nursing home, symptoms, untested, at-risk, testing, genetic testing, geneticist, negative, gene, chorea, test, CAG repeats, grandfather, huntingtin, memory, caregiving, wheelchair, Medicare, Medicaid, disabled, sterilize, sterilization, technology, awareness, cure, treatments, Catholic, stress, struggle
Friday, October 21, 2011
Providing for the future requires a huge gamble.
| Tags: Huntington's, gene, symptoms, daughter, wife, mother, tested negative, testing, Obama, brain, onset, swimming, HD war chest, Social Security, Medicare, disability, HD-negative, research, dementia
Friday, September 2, 2011
Your personal testimony is the best way to fight HD's stigma.
| Tags: stigma, brain, fatal, Huntington's, mother, diagnosis, tested, gene-positive, discrimination, at-risk, testing, closet, tested positive, genetic, geneticist, pre-existing condition, treatment, cure, clinical trial, researcher, advocate, genetic testing, trial, awareness
Wednesday, August 24, 2011
The stakes are enormous: treatments – or another generation lost to HD.
| Tags: Huntington's, gene-positive, clinical trial, trial, caregiver, Center of Excellence, research, treatment, cure, scientist, at risk, Alzheimer's, Parkinson's, wheelchair, mother, sister, Lundbeck, tetrabenazine, Xenazine, observational study, LaVonne Goodman, Keith Elliston, Jan Nolta, Huntington's Disease Drug Works, symptoms, symptomatic, stigma, denial, closet, testing, tested, genetic testing, Enroll-HD, chorea, shaking, FDA, CHDI, awareness, stem cell, mesenchymal stem cell, brain, neuron
Monday, March 14, 2011
Memories, doubts, and the aftermath of exiting the HD closet.
| Tags: Huntington's, solidarity, testing, genetic testing, wife, mother, daughter, tested positive, gene-positive, psychologist, diagnosis, symptoms, tested negative, orphan disease, discrimination, CHDI, Yale, social justice, neurological, activism, activist, closet, Alnylam, treatment, cure, research, RNA interference
Thursday, March 3, 2011
I connected with my 'HD family.'
| Tags: Huntington's, denial, support group, symptoms, gene-positive, mother, diagnosis, wife, daughter, father, death, caregiver, caregiving, at-risk, tested negative, closet, CHDI Foundation, CHDI, gene, nursing home, warrior, sister, tested, testing, research, trials, genetic, scientists, drug, activist, hope
Friday, December 24, 2010
I remained symptom-free in 2010.
| Tags: Huntington's, clinic, tested positive, mother, symptoms, depression, mood, chorea, Center of Excellence, cognitive, test, testing, gene-positive, death, Huntington's Disease Drug Works, trehalose, coenzyme Q-10, omega-3, blueberry, creatine, Brazil, anxiety, faith, spirituality, psychotherapy, hope, at-risk, diagnosis, genetic, genetic testing
Monday, October 11, 2010
As I approach my destiny with HD, I'll need to build ever stronger ties to people.
| Tags: Huntington's, gene-positive, mother, wife, daughter, going public, Isis, Isis Pharmaceuticals, genetic, oligonucleotide, RNA, antisense, cure, symptoms, brain, CHDI, testing, tested positive, HD-positive, stigma, coming out, come out
Wednesday, May 26, 2010
I revealed my gene-positive status to my daughter.
| Tags: daughter, gene-positive, Huntington's, disease, Terry Leach, juvenile Huntington's, tested, test, mother, wife, HDSA-San Diego, Shoot to Cure HD, Chargers, Huntington's Disease Drug Works, came out, testing, at-risk, come out, creatine, supplement, truth, symptoms
Saturday, April 17, 2010
How do you leave the closet about a disease that will deeply alter people's perceptions of your abilities?
| Tags: Huntington's disease, gene-positive, closet, mother, symptoms, discrimination, daughter, wife, Yale, test, coming out, Giamatti, cure, activism, tested negative, testing, genetic testing, genetic, HDSA-San Diego, advocacy, psychotherapist, freedom, Edgemoor, wheelchair, at-risk, at risk, Race Across America, H.R. 678
Friday, March 26, 2010
The new health care law will finally guarantee us coverage and care.
| Tags: pre-existing condition, Huntington's, HDSA-San Diego, symptoms, Obama, gene-positive, tested positive, insurance, at risk, at-risk, mother, tetrabenazine, discrimination, personalized medicine, testing, psychotherapist, stress, coming out, family, families
Thursday, July 23, 2009
If we won't help ourselves, why should anybody else care?
| Tags: Huntington's disease, symptoms, genetic defect, mother, brain, cells, Robi Blumenstein, CHDI, drug, gene-positive, denial, HD, activism, activist, treatment, drug pipeline, families, drug discovery, anonymous, MRI, smell, motor skills, time bomb, family, at-risk, testing, test, attitude, neurologist, clinic, HDSA, Center of Excellence, trial, Jim Calhoun, Lessons from the Ancients, fundraising, advocacy, House Bill 678, Huntington's Disease Advocacy Center
Wednesday, July 8, 2009
Will I take an Isis drug? Or will I be doomed to end up like my HD-stricken mom?
| Tags: Isis Pharmaceuticals, Huntington's, California, mother, symptoms, wheelchair, laser-guided missile, CHDI Foundation, testing, research, drugs, fight, neurological, humanity, Isis
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